Don’t let the highs get too high. Don’t let the lows get too low.

This is the advice I keep giving my friends and family.

If every piece of good news caused me to cry with joy…and if every piece of bad news caused me to cry with grief – I wouldn’t be able to cope as well as I do.

Exhibit A: This week, I was scheduled to get a Groshon catheter placed in my chest on Monday and then be admitted to the hospital on Tuesday. However, looming over all of this was my PET scan results from a week ago.

The scan showed some kind of small, vague PET activity in my chest. My oncologist ordered a CT scan the next day so the UCLA oncology team could take a closer look and see if this was something to be concerned about. They held their weekly meeting Monday morning and decided to review all of my PET/CT scans from this past summer in order to make a determination of whether to a) proceed with stem cell treatment or b) order a biopsy to try to figure out what these hotspots might be.

All of this adds up to no catheter and no treatment for me today.

Yes, this process is full of frustration and worry and anxiety and “two steps forward/one step back”. City of Hope believes that I should go into transplant immediately, regardless of the small activity. But UCLA wants to make sure I am in as complete remission as possible before beginning the process.

So what are my options?

Do I obstruct UCLA’s attempt to be thorough? Do I cry and worry and shut down? Do I continue to put one foot in front of the other, take a deep breath and practice patience? Do I turn to City of Hope and undergo my treatment there?

I was once told I have cancer. But, it was the “good kind” of cancer. Then I was told that the 80% effective treatment didn’t work for me. Then I was in remission. Then not. I suffered through 3 weeks trapped in a hospital room. I’ve had the chills so bad I thought my teeth would shatter. I’ve been poked and prodded, injected, poisoned, irradiated, hugged, cried over, prayed for, supported and insulted, knocked out, knocked down and picked up. I was present when two of my dearest friends got married to each other. And I was in the hospital when another two of my dearest friends got married. I’ve looked in the mirror and not recognized myself. I’ve apologized to my wife many times for being sick. I had a nervous breakdown. I’m pulling a 4.0 in grad school. I’ve laid my best friend to rest. I’ve held my friends’ newborn babies. I experienced loving kindness from a group of strangers like I never believed existed. Yesterday, a nurse gave me a hug and I cried.

What is the appropriate reaction when you are told that the life threatening procedure that might be your last chance at survival has been postponed?

For me – I went out to a lovely steak dinner with my wife and brother.

In all this, my brother donated his stem cells on Monday morning and filled up the bag in one session. Whenever I’m approved for the treatment, his stem cells are tagged, bagged and ready to go. One step forward.

He deserves a special shout-out. He handled the tests, physical, shots and pheresis procedure like a champion and I’m extremely grateful for his dedication, patience and perseverance. For a guy who is a bit scared of needles (and who isn’t?), he sure didn’t act like it. He never complained once. He took time away from his family and work to travel half-way around the world, eat hamburgers, watch some American TV and – oh yeah – give me the cells I need to stay alive. If anyone finds a Hallmark card for that, please let me know, because I don’t have the words.

My lifesaver

And a great dad

 

 

 

 

 

 

 

Any medical procedure – even a voluntary stem cell donation – causes a person to reflect upon their own mortality in some way. I hope he goes away from this experience appreciating the fragility of life a little more. And I hope he feels proud of what he’s done for me. It has been a joy to have him visit, to see his family every morning on Skype and to get to know my brother a little bit better.

For now, I’m off the SGN-35 and I’ll let you know as soon as I know what’s going on with me. This should just be a minor hiccup in the process of getting through an allogeneic stem cell treatment. But we shall see.

Advertisements

14 responses to “Don’t let the highs get too high. Don’t let the lows get too low.

  1. All I can say is that I’ve been right there in that exact place and it’s so very difficult. I know it’s so, so hard to sit there in flux right now and my heart is with you. Your attitude and ability to reflect and look ahead are admirable and will carry you through this whole insane ordeal. Going out for a steak dinner sounds like the perfect solution to me. Screw self pity parties. And cheers to your brother for his bravery and fortitude in this process. I’m so, so happy that you have your bag of life-saving cells waiting for you. Huge step.

  2. We think of you every day and are always sending our love, best wishes and positive thoughts. Much love to both of you.

  3. Rats! Not that I am rushing you into what will be a miserable next few weeks, but from personal experience, sometimes if you have to go through something miserable, you just want to get it going, so you can put it behind you. I’m sorry you have to wait, although you have already completed a master’s in that area too! We are thinking about you!

  4. Thanks for being able to get all that down on your blog to share it. I appreciate that you do that work Steve. Love you.

  5. at a bar in my dream last night you were unsure about being admitted to the hospital and wanted an apple martini. concerned the alcohol might  affect your meds we ate three bowls of cheesy popcorn before you inexplicably turned into chaz bono and confessed that you didn’t really like dancing but didn’t want to let your mom down. steve, regardless of your interest in reality dance competitions and/or apple martinis, cher and i both love you so much. this is horrendous. you are amazing. and way to go len.

  6. Love you Steve

  7. I dedicate one of my favorite songs to you:

    “Tightrope”

    JANELLE MONAE
    Lyrics:

    Monae and Leftfoot

    Whoaaa
    Another day
    I take your pain away

    Some people talk about ya
    Like they know all about ya
    When you get down they doubt ya
    And when you dip it on the scene
    Yeah they talkin’ bout it
    Cause they can’t dip on the scene
    Whatcha talk about it
    T-t-t-talkin’ bout it
    When you get elevated,
    They love it or they hate it
    You dance up on them haters
    Keep getting funky on the scene
    While they jumpin’ round ya
    They trying to take all of your dreams
    But you can’t allow it

    Cause maybe whether you’re high or low
    Whether you’re high or low
    You gotta tip on the tightrope
    (Tip, tip on it)
    T-t-t-tip on the tightrope
    (Tip, tip on it)

    Maybe, maybe, maybe

    Whether you’re high or low
    (High or low)
    Maybe whether you’re high or low
    (High or low)
    You got to tip on the tightrope
    (Tip, tip on it)
    Now let me see you do the tightrope
    (Tip, tip on it)
    And I’m still tippin’ on it

    See I’m not walkin’ on it
    Or tryin’ to run around it
    This ain’t no acrobatics
    You either follow or you lead, yeah
    I’m talkin’ bout you,
    I’ll keep on blaming the machine, yeah
    I’m talkin’ bout it,
    T-t-t-talkin’ bout it
    I can’t complain about it
    I gotta keep my balance
    And just keep dancin on it
    We gettin funky on the scene
    And you know about it,
    Like a star on the screen
    Watch me tip all on it

    Then maybe whether I’m high or low
    (High or low)
    Maybe whether you’re high or low
    (High or low)
    Ooh, you gotta tip on the tightrope
    (Tip, tip on it)
    Yeah, tip on the tightrope
    (Tip, tip on it)

    Maybe, maybe, maybe

    Whether you’re high or low
    (High or low)
    Maybe whether you’re high or low
    (High or low)
    Tip on the tightrope
    (Tip, tip on it)
    Maybe let me see you tightrope
    (Tip, tip on it)
    And I’m still tippin’ on it

    Big Boi
    You gotta keep your balance
    Or you fall into the gap
    It’s a challenge but I manage
    Cause I’m cautious with the strap
    Doing damage to your canvas thta a doctor cannot patch
    See why you don’t want no friction
    Like the back of a matchbook
    That I pass as I will forward you
    And your MacBook
    Clothes shows will shut you down
    Before we go-go backwards
    Act up, and whether we high or low
    We gonna get back up
    Like the Dow Jones and NASDAQ
    Sorta like a thong in a ass crack,
    Come on

    I tip on alligators and little rattle snakers
    But I’m another flavor
    Something like a terminator
    Ain’t no equivocating
    I fight for what I believe
    Why you talkin’ bout it
    S-s-she’s talkin’ bout it
    Some callin’ me a sinner
    Some callin’ me a winner
    I’m callin’ you to dinner
    And you know exactly what I mean,
    Yeah I’m talkin’ bout you
    You can rock or you can leave
    Watch me tip without you

    N-N-Now whether I’m high or low
    (High or low)
    Whether I’m high or low
    (High or low)
    I’m gonna tip on the tightrope
    (Tip, tip on it)
    MMMMMM
    (Tip, tip on it)

    Maybe, maybe
    Whether I’m high or low
    (High or low)
    High or low
    (High or low)
    I got to tip on the tightrope
    (Tip, tip on it)
    Now maybe tip on the tightrope

    You can’t get too high
    (You can’t get too high)
    I said you can’t get too low
    (We can’t get too low)
    Cause you get too high
    (You can’t get too high)
    No you’ll surely be low
    (No, you’ll surely be low)
    1, 2, 3, Ho!

    Yeah, yeah
    Now shut up, yeah
    Yeah, now put some voodoo on it
    Ladies and gentlemen the funkiest horn section in Metropolis
    Yeah, oh
    We call that Classy Brass!

    Ohhhhhhh
    OH!

    Do you mind?
    If I play the ukulele
    Just like a little lady
    Do you mind?
    If I play the ukulele
    Just like a little lady
    As I play the ukulele
    If I play my ukulele
    Just like a little lady

  8. Steviepants you wrote this on the back of a photo you took of me and my niece Molly. “You Love and you are Loved” words so true about …you!
    I think of you every single day and Jen of course! too. I try not to bug you because I know it takes energy for you to respond to everyone who wants to support you. Just know that I admire the grace with which you face your life. You are a rock star and I am a fan. XO

  9. That is some rather brilliant writing about rather horrific subject. I’d give you a 4.0 for this scary/funny/sad blog post right here/right now. What a privilege to be your professor and to walk through that other long, arcane process with you….

  10. thinking of you often, i hope you ordered mac and cheese or mashed potatoes with your steak, I don’t understand how steakhouses always do sides so well…
    much <3, <3, ❤

  11. Steve,
    I think about you and Jen almost daily, even though I don’t know you well. I often wonder how you’re holding up. What you’ve been through and what you continue to go through blows my mind. I wish I could think of something to say that could help you the way that reading your blog helps me. You are an inspiration and you and Jen remind me to find the good and the positive all around me and never take for granted the people we love and who love us back. Keep fighting the good fight.

  12. Dude – thanks for posting the update. I am in your corner cheering you & your wife on through this fight!
    Mucho Macho Love, Cathy

  13. Steve, I’m amazed how well written and thought out this post was, especially for someone from Fishtown. 🙂 I think about you and Jen every day and you inspire me more than you can imagine. This f*ckin’ cancer might have changed the way you see the world but it hasn’t changed you. You still rock!!

  14. In awe of your strength and your amazing ability to express yourself. Love to you and Jen!

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s